The waiting list for Oklahomans seeking state-paid care for developmental disabilities has jumped to more than 7,000, and some families have been on that list for nearly a decade.

Danielle and Duane's son Harrison and 7-year-old daughter Libby play in the backyard of their Yukon home. Photo by Clifton Adcock, Oklahoma Watch

The number of people on the list has risen by 24 percent since 2010, when Oklahoma had the third largest waiting list for such services in the nation, according to a University of Minnesota study. Just under half the applicants are children; most are from low-income families.

State officials say the list has expanded because of insufficient state and federal funds to provide additional services.

In the meantime, Oklahoma is moving to close its only two large institutions that offer long-term care for the developmentally disabled. Many of those centers' roughly 400 residents will shift to community homes or their own families' homes. The residents won't be placed on the waiting list.

Gov. Mary Fallin has said she wants to improve services for the developmentally disabled and in March appointed a panel to develop a comprehensive plan that would include addressing the waiting list. The panel's recommendations are expected next year.

Meantime, a long waiting list remains.

Erin Taylor is among those watching the list. Taped to her office door at the Oklahoma Developmental Disabilities Council, a state agency that helps coordinate services, is a picture of her 10-year-old son Henry Weathers. Just above it is a note with the number 6,757 — the waiting-list total when she posted the number last year.

Henry is about No. 4,900 on the list.

A friendly boy who loves the Muppets and hopes to work someday as a voice actor in animated movies, Henry was born with a heart condition. He had several surgeries before age 5 and later a heart transplant.

He suffered a brain injury because of his heart condition, Taylor said. He takes medicines that cost about $2,000 a month and gets continuing medical procedures that cost anywhere from $15,000 to $32,000. His health expenses have run about $2 million, she said.

The family gets some medical coverage through a federal program for middle-income families, but the financial strain has been tremendous, Taylor said. Once Henry emerges from the waiting list, she hopes he'll get medical assistance, vocational and job search training, independence-skills training and other services.

“Best case scenario, he will be 17, 18 years old before he gets services,” Taylor said.

Taylor said she wants her son to live in the community and be a productive member of society, which she said more services would help him achieve.

“These services are incredibly important for us,” she said. “I just want my kid to have a great life like I want for my other kids.”

Shifting care

Since the 1980s, Oklahoma and the rest of the nation have been shifting their approach to caring for the developmentally disabled from an institutional one to home- and community-based care.

Between 1985 and 2010, the number of people with developmental disabilities in large, state-run facilities declined by 82 percent in Oklahoma and 72 percent nationally, according to the University of Minnesota study. Residents were moved into family settings or community homes, and services were provided there.

States have embraced the model because many of the disabled and their families prefer in-home care, and the state views it as a lower-cost alternative, although the latter is debated.

As part of this trend, Oklahoma will close the Southern Oklahoma Resource Center in Pauls Valley in 2014 and the Northern Oklahoma Resource Center in Enid in 2015. Some family members have protested.

The federal government has enabled the shift with a program that waives the requirement for institutional care. States get federal matching Medicaid funds to provide long-term case management, home health aides, personal care, medical care, therapy, vocational training and other services. Money can also be used to retrofit homes to accommodate the disabled.

Oklahoma joined the waiver program in 1986, and the number of people granted waivers has climbed from that first year by more than 14,000 percent. Since 2008, however, the number has slipped — and the waiting list has grown — as funding got tighter and more families applied. The waiting list rose from 5,737 in 2010 to 7,109 in March this year.

An extra $1 million from the Legislature brought the waiting list down, but with more coming on, the net drop was only 11 people by April, said Wanda Felty, a parent advocate and a member of the governor's panel.